Things are looking up, I think…
October 22, 2008 | Updates
Ah, it feels like Friday, but it’s only Wednesday. But that ok, because things are looking up, I think…
We’ve done 2 more blood draws since the last one that came in in the 700’s. The third one was in the 600’s. The last one (done on Tuesday) was in the 500’s. So, Samuel’s liver is healing and that’s certainly a good thing. However, the posturing, crying, kicking, flopping and always being drenched in sweat continued through Tuesday morning. We mostly held him every waking hour because putting him down hasn’t been much of an option. Luckily, he has slept most of each night, with the help of a lot of medication. That has been our saving grace.
By Monday night, I had just about opted to take him down and check him back into Primary’s. I was at my wits end and out of ideas of what might be causing it all. We have all his meds and feedings back to what they were before this all started. And Monday afternoon, he started running a fever of 101-102 degrees. This concerned me, so I called the neurologist. He said to watch him overnight and try to keep the fever down, but not to give him any tylenol as that would keep his liver from healing. So, I slept on the floor in his room with the window opened trying to keep him cool, but worried that he might get chilled.
By Tuesday, I was sure we would head to Primary’s. I called his rehab doctor and explained the whole situation to her and she said the only way to get checked into the hospital would be to go through the ER. I HATE going through the ER. I called his neurologist again and he suggested we take him to his local pediatrician one more time to make sure it wasn’t something simple. I consented to do this - despite the fact we have been there more times than I can count in the last few weeks - for one reason and one reason only…Tom.
Monday evening, Tom gave Samuel a Father’s blessing and blessed him that he might somehow be able to tell us what was wrong with him. It was probably 3 am that next morning that I finally couldn’t take sleeping on the floor in Samuel’s room anymore and headed up to my own bed. As I climbed under the covers, Tom jumped slightly and stuck his arm out like he didn’t want me to get in bed and said, “Sore throat.” I was confused to say the least and said, “Do you have a sore throat?” thinking that he must be sick and didn’t want me to get too close and end up getting sick, too. He said, “No, that’s what’s wrong with Samuel. He has a sore throat.” I laughed silently to myself and thought Tom must be talking in his sleep and said, “Uh, oh, ok?” and climbed into bed and went to sleep.
Tuesday morning, I told Tom what he had done. He smiled and said, “Yea, I had the most vivid dream. I dreamt I was holding Samuel and suddenly it came into my mind that he had a sore throat. So I asked him in my dream if he did and he made a noise that I knew meant yes. It was so vivid that it seemed entirely real.” And that is why I consented to go the pediatrician one more time.
And guess what? Samuel has a sore throat. Score one huge one for dad! His toe was also still infected. So, they switched antibiotics and we came back home. By Tuesday evening, Samuel was calm and sat on my lap for most of the night. And today, he has been a very good little boy. He even sat on his dad’s lap for 2 hours while I went to a meeting this evening.
Samuel still isn’t himself 100%. I’ve been worried because he seems to be constipated, so I’m working to keep things moving right in him. He also still has the constant low grade fever and this morning, he sounded congested. Also, as I was brushing his teeth last night, I noticed he was missing 2 teeth, not 1. I’m not sure when the other one fell out or where it went. His mouth has been bleeding for days from his biting his tongue and cheeks, so I didn’t even realize he had lost the tooth. I just hope it fell out or he swallowed it. Leave it to me to be worried that he aspirated it and will get pneumonia from it :(.
But otherwise, he is SO MUCH BETTER. He is calm and making lots of sounds all the time. I do think he may be having a lot of myoclonus seizures and they are showing up as strange movements in his face. But I have talked to the neurologist and have decided that we won’t mess with any of his medications until things settle back down and I feel that he is as close to his normal self as possible. I need to be able to tell what a new med is doing to him and can’t do that if he isn’t feeling well to start with.
Thanks for all your prayers. We are at least getting sleep at night and can now lay Samuel down for some time during the day and can know he won’t be hurting himself. Keep praying he will get all the way back to normal - at least his normal.
Love,
The Jewkes
RSS feed for comments on this post.
TrackBack URI
October 22nd, 2008 at 11:13 pm, Shari K. Says:
I have been thinking good thoughts for Samuel ever since I read the previous entry, where he and you BOTH were soooo miserable.
I’m very happy that things are going better for Samuel now, because that means better days for you as well. I know he’s not totally out of the woods yet, but I think (and HOPE) you are correct when you say “things are looking up.” 
I will remain optimistic for you and little Samuel!!
- Shari in San Jose
October 22nd, 2008 at 11:59 pm, Tiffanie Says:
We are still praying for you and Samuel. I really hope he is feeling better and gets back to regular Samuel. I wish I could come over and help. We love you.
October 23rd, 2008 at 3:05 pm, Caradie & Corbin Says:
Oh Teresa, I’m so happy he’s feeling a little better. WAY TO GO DAD!!! Corb had strep last year & man he sure didn’t feel good so I sure hope that fixing the sore throat will help make things all better.
Love you guys Caradie
October 23rd, 2008 at 3:53 pm, Darlene Says:
Hi Jeweke’s:
What great news that things are starting to fall into place. Way to go Tom! I hope you will see more improvements throughout the week. I will continue to keep Samuel in my prayers.
much love,
Darlene
October 24th, 2008 at 1:21 pm, Suzi Searles Says:
I’m so glad to hear that things are getting better. I know that you can only go so long without getting any sleep, before you can’t function anymore. Been there done that! I will continue to pray that God will reach down His mighty Hand and touch Samuel, so that the seizures will go away and he will get back to healing once again.
Suzi
October 25th, 2008 at 7:25 pm, Jon & Kaye Neves Says:
Amazing… We are sorry to hear life has been rougher then usual. Glad things are starting to look up again. We are so blessed to have A Heavenly Father that watches over us and is ALWAYS here to hold us when trials seem too much. Thank you sharing this story - nice reminder for us all to know that we are blessed through the Priesthood power.
Love to you all!
October 27th, 2008 at 2:06 am, Liz and Ashleigh Says:
Sorry to hear what a dreadful time you have all been having. It is so incredibly hard to have a child that can’t tell you what’s wrong. People say it’s like when a baby is sick, but it’s nothing like that because a baby is small and light and you can carry them around and do things to soothe them. Big boys like Samuel are too heavy and wriggly to be carried around and it is stressful on everyone.
Hopefully you are on the path to healing now.
Love Liz and Ashleigh